August 22, 2024 • 35 mins
In this conversation, Elder Law Attorney Bob Mannor and Carrie Aalberts, founder of DementiaDarling.com, discuss tips and strategies for supporting individuals with dementia and their caregivers. They emphasize the importance of supporting independence and understanding the changes happening in the brain of someone with dementia.
Bob and Carrie discuss the challenges faced by family caregivers and the need for dementia-focused care. They both highlight the importance of effective communication and understanding the emotions of individuals with dementia.
Carrie shares her personal experience with her grandmother's dementia and her journey in the field of gerontology. They also discuss the concept of dementia villages, such as Hagevik in the Netherlands, where individuals with dementia can live independently with the support of professional caregivers.
They also discuss the challenges of making decisions for a loved one with dementia and offer suggestions for addressing these challenges. They highlight the need for education, resources, and support for caregivers and individuals with dementia. The conversation concludes with a reminder to meet individuals with dementia where they are and to practice self-care as a caregiver.
Episode Highlights
- Dementia caregivers often feel isolated and need a safe place for support and resources.
- Effective communication with individuals with dementia involves using concise and clear language and focusing on emotions.
- Preparing for the last stage of life, including dementia care, is essential but often overlooked.
- Dementia villages, like Hagevik in the Netherlands, provide a community for individuals with dementia to live independently with professional caregiver support. Supporting independence is crucial for individuals with dementia.
- Understanding the changes happening in the brain of someone with dementia can help caregivers provide better care.
- Accessing education, resources, and support is essential for both caregivers and individuals with dementia.
- Meeting individuals with dementia where they are and practicing self-care are important aspects of caregiving.
Host: Attorne
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ABOUT US:
Mannor Law Group helps clients in all matters of estate planning and elder law including special needs planning, veterans’ benefits, Medicaid planning, estate administration, and more. We offer guidance through all stages of life.
We also help families dealing with dementia, Alzheimer’s disease, Parkinson’s disease, and other illnesses that cause memory loss. We take a comprehensive, holistic approach, called Life Care Planning. LEARN MORE...
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Carrie Aalberts (00:00):
You're listening to Advice from your
Advocates, a show where weprovide elder law advice to
professionals who work with theelderly and their families.
Attorney Bob Mannor (00:10):
Welcome back to Advice from your
Advocates.
I'm Bob Manor.
I'm a certified elder lawattorney in Michigan and I've
been looking forward to thispodcast.
This is going to be a reallyinteresting one.
So we've got Carrie Alberts.
She's an educator and advocatefor dementia issues and she has
a really interesting socialmedia presence and website
called Dementia Darling.
(00:31):
So Keri welcome.
Carrie Aalberts (00:33):
Thank you so much for having me.
It's an honor to be here andtalk.
Attorney Bob Mannor (00:37):
So tell us about the work that you do
through DementiaDarlingcom.
Carrie Aalberts (00:41):
Yeah, I have been on social media under the
persona dementia darling foralmost five years.
In October it'll be five yearsand I wanted to create a safe
place for dementia caregiversand, of course, all caregivers
are welcome but I specificallywork with dementia caregivers
and I consistently in my journeyfound that dementia caregivers
(01:03):
felt very isolated.
Consistently in my journey,found that dementia caregivers
felt very isolated and I wantedto have a place that was a safe
place for them to feel seen, tofind resources and truly to give
them a virtual hug and sayyou're doing amazing and you're
not alone in this and reallyhelp build community for them.
So that's what I've done andnow I'm full-time.
(01:24):
Dementia darling, 24-7, is myjob.
Attorney Bob Mannor (01:28):
That's great.
You know it's interesting youtalk about that, that it can be
for any caregiver, and you knowwe have the same thing.
So we, for the last few years,we've been saying we're a
dementia-focused law practiceand the way we came to that was
that you know, I help a lot ofpeople with long-term care and
finding the right long-term care, making sure that we're
advocating for good care,finding ways to pay for it, all
(01:50):
those types of things.
But the bottom line was, aftera while, we realized that a good
percentage probably 75% or moreof the families that we're
helping were dealing withsomeone with dementia, and so
once we realized that, we said,well, maybe we should say that
and say that this is a lot ofthe people that are going to be
struggling that this have afamily member with dementia, and
(02:10):
that complicates things right.
Carrie Aalberts (02:12):
Yes, yes, and we don't see that in society
enough.
We don't see dementia out there, and so that means the world
that you guys were able to tapinto that and see the need.
And now you make people feelseen by that and I just
appreciate you because, like yousaid, it's such a difficult
journey to navigate.
I mean, aging is difficult tonavigate in general, being a
(02:34):
human is difficult to navigatein general.
Now let's throw on top dementia, right, and all that comes with
that.
So, yes, having supportiveprofessionals that really truly
understand the struggle is agame changer during the journey.
Attorney Bob Mannor (02:49):
I really appreciate the education and you
know the way that you do it,where you're getting out into
social media and you're gettingyou know kind of the message out
.
This is very difficult forfamilies to navigate.
So if you know some of the alot of the caregivers, I'm sure
that you work with our familycaregivers.
So of course there's going tobe some paid professional
caregivers, but a lot of themare the family caregivers and
(03:10):
this is so strange for thembecause the person that they're
caregiving for you know theirdad or their mom or their spouse
or their grandparent orwhatever, and sometimes it's
really hard to separate theprevious relationship from this
new relationship and justsupporting them and educating
them about you know the best wayto deal with different
(03:34):
behaviors, different you know,things that come up.
That, I think, is great and Ilove how you do it, that you're
getting out.
It's not just you have to go tothis lecture in some lecture
hall.
You're getting out to the realfolks and real people and
getting this information out.
Carrie Aalberts (03:47):
We don't have time for that right.
We don't have time to go, sitin a day training and find
respite for our loved one andget there and all the things or
whatever.
Yes, I try to make it reallydigestible and it's confusing
for me and I've been in it for12 years and have a master of
science degree focused in it andstill is hard and I'm still
learning every day.
It is a completely new worldspecifically dealing with
(04:11):
dementia, and people need thatsupport, and we don't know until
we know.
So if you can, you know, watcha tick tock for 30 seconds once
a day and learn something thatcould really, you know, help you
in your day to day life.
Caring for someone, man, that'sa win, so yeah.
Attorney Bob Mannor (04:29):
Yeah, and you know, lawyers are known for
being too wordy and using bigwords and talking too long and
all that, and that's somethingthat we've had to learn.
So we have a TikTok page thatwe, you know, has gone viral a
few times, and what?
We learned, but you got to getright to the point.
Carrie Aalberts (04:45):
You really have to get information out there an
entertaining but short, easy tounderstand way, and that's what
you do with the dementiaeducation, which is great, I'll
tell you, though it's verydifficult for me and you're
right, and that's actually howyou should communicate in
dementia care too.
You keep it really concise andto the point and clear.
Less words the better, and I'msomeone who I always joke.
(05:08):
I said they hated my eldershated me because I was too loud,
I talked too fast and I do allthe words.
So they're, you know, they'relike, oh my gosh, get this girl
away from me.
So I have to be very consciousof you know, an intentional when
I am, you know, doing that.
Attorney Bob Mannor (05:23):
Well, and I was reading about this the
other day and I'll see if youagree with that you know a lot
of the words.
So if someone is experiencingdementia, and a lot of times the
caregiver, the family or eventhe professional might be trying
to communicate something withthem and my what I was reading
in my personal experiences.
They might not be able toremember those words but they
(05:44):
can remember sort of the feelingthey had when you had those
words.
So if you're confusing them oroverwhelming them, that's the
feeling they have.
If you get to the point of theissue and dealing with it in a
in a way that they canunderstand sort of the emotions
of the situation.
I think that that is a muchmore effective communication.
Carrie Aalberts (06:02):
You are spot on .
They they will take whatever webring.
They take that on right.
So you have to really go intoit with the right energy.
And I say to caregivers you'reallowed to be in a place where
you don't think you should bearound them at that moment.
You're allowed to step away andtake a breath, because that is
(06:23):
fair.
You are human and you can'talways be on and perfect and all
the things and happy and we'regoing potty.
You know we can't always dothat and it's hard because it
does make or break a situation.
Dementia care, as you weresaying, you know, feeding off
their energy.
You know they might notremember you your name, but
they'll remember how you makethem feel and they will.
(06:44):
You know you your name, butthey'll remember how you make
them feel and they will, youknow if you.
You know it's so hard whensomeone has, like a negative,
you know, experience withsomeone and that just sticks
with them and then they kind ofbecome scared of that person.
That can happen a lot inprofessional care, you know, and
things like that.
So, yes, it's very important.
Attorney Bob Mannor (06:59):
So I'd like to know.
I know a little bit becauseI've done my research and I've
been following you for a bit nowbut I'd like our listeners to
know a little bit more about you, and how did you get into this?
What was your own personalexperience?
Things like that.
Carrie Aalberts (07:13):
Yeah, thank you for asking.
Well, so you'll like this.
So my dad is actually a realestate and so he was a real
estate lawyer and then abusiness law and ethics
professor his whole career UNLVin Penn State, and so that was
my life.
So when you said, yes, lawyerslike to use big words, I'm like,
(07:33):
yeah, I grew up in a home likethat was living with dementia my
dad's mom and she unfortunatelypassed away from dementia when
I was 13.
So please keep in mind, I wasyoung, didn't know what was
going on.
I was like what is going onwith grandma?
She's acting so strange, youknow no education around it, but
(07:56):
I could see my dad throughthose years as her main family
caregiver, who is a lawyer, whois a smart guy not knowing what
to do not knowing how tonavigate the system it's.
It is not easy for anyone.
Um, and and I even talked to, Ijust talked with a doctor.
She's a, she's a gerontologistand she's like, now that it's my
(08:17):
dad, like Jerry a gerophysiciansorry, she's full ball doctor
in this and she's like, now thatit's my dad, everything's gone
out the window.
So that's another thing too,it's hard when it's your family
right Absolutely true.
Right, and so I watched himnavigate this and he did an
amazing job.
But it was really hard.
He was on his own, he was doingthis and I'm just so glad to
see that there are thingsavailable now and there's more
(08:40):
talking about it.
Still such a long way to go,but I didn't ever understand.
I just know it was verystressful for my father.
It was a hard time for my dadand it definitely was affecting
the family, watching my grandmaprogress and her birthday was on
Christmas Day.
So you know it's like everyChristmas.
You know, during my teenageyears it was like watching her
(09:02):
kind of just progress into thisdisease and not being able to
engage with us on the bigholiday and her birthday and I
just remember that so vividly.
But I'm so grateful for thetime we had with her and what I
learned through it.
But that always stuck with meand I was able to go to a
college that had a program ingerontology, the study of aging.
(09:23):
So I was like, sign me up.
So I have my bachelor andmaster's degrees focused in
gerontology, the study of agingand family studies as a whole
and just the progression ofbeing a human across the
lifespan.
And I just I fell in love.
During my time in my internshipsI started and I stayed there my
(09:44):
whole college career at anintergenerational adult daycare
center.
So there was little kids,preschool and then the elders
with dementia, mainly in theother end, and we would meet
twice a day for snacks and itwas just, it filled your soul
and that solidified my passion.
And then I, you know, wentthrough and worked in senior
living, worked in nonprofits.
(10:05):
I ended during COVID in as adirector of an adult daycare
center out here in Vegas where Ilive and ended up getting
really burnt out and so Iswitched over to the age tech
world.
I went to the age techengagement kind of sector of
(10:32):
senior living and finding reallycool tech that keeps people
happy and gives them, you know,fun things to do.
And through that time I'vereally learned a lot about the
different things that are beingmade for people living with
dementia, the types of play thatare available for people living
with dementia.
People living with dementia,like a fun fact, there's like 22
different types of play thatyou and I can enjoy in life, but
people living with dementia canonly experience about three
types of play.
So it's really, you know,learning how to meet your person
(10:52):
where they're at.
But yeah, all through this timedoing dementia darling and just
trying to build up a safe placeand resources and all the
things that was really long, butI uh you know, I tried to um
just keep learning and and shareuh all that I've learned along
the way um with caregivers,because every single day there's
(11:15):
new people coming on thisjourney.
We have over uh 53 millionfamily caregivers unpaid
caregivers in the U S Wow.
Attorney Bob Mannor (11:22):
Wow, yeah, no, and you know it's
interesting, the dynamics ofwhat's coming along, and you
know this is something that'snot going to go away and I don't
think that we've done a verygood job of preparing families
for this stage of Not at all Oneof the things I always say, and
(11:43):
this is going to sounddepressing, but it's just real
and I like people to justacknowledge it.
So there's three possiblefutures.
You're going to either, youknow, live a really long life
and and never really have anyserious illness and die
peacefully in your sleep andthat does happen, but it's very
rare.
Yeah, option two is you coulddie young and that's not so good
(12:04):
.
And option three is you'reprobably going to have some
period of time before you diethat you're going to be
dependent on other people and wejust don't prepare for that
time period and families don'twrap their head around that idea
, and it's something that Ithink that you know.
I guess previous generationsdidn't have to deal with this
much because people died younger, things like that.
But I really think that you knowthere's so much about you know
(12:28):
preparing for different stagesin your life, preparing for
having children, preparing forgetting married, preparing for
retiring, and then we have thisimportant last stage of life
that everybody just kind oflooks right through and imagines
it doesn't exist.
And so I really what you'redoing and educating folks about
the reality of this.
Tell us a little bit more ofhow people might be able to
(12:49):
engage with Dementia Darling.
There's different resourcesthrough social media, but what
else can they do to engage?
Carrie Aalberts (12:56):
Well, I'm definitely coolest on Instagram
and that's where I post the most, but at Dementia Darling on
there.
And then you know Facebook,tiktok, all the things, linkedin
, but yeah, I have.
At Dementia Darling on there,and then you know Facebook,
tiktok, all the things, linkedin.
But yeah, I have aDementiaDarlingcom and I try to,
you know, put up resources.
And then, if you want to join my, mailing list on there I send
out, you know resources anddifferent things that I learn
about and I I try to share asmuch as possible everything
(13:19):
that's out there for caregivers,all the free things, all the
amazing resources and companiesand people that are popping up.
So, yeah, my website, for sure,and I also have a podcast
called Gather Darlings with myamazing bestie that's also in
the aging industry and isamazing at what she does.
Yeah, and it's going to be fun,definitely follow.
(13:41):
I'm heading next month for amonth away in Europe for work
and doing some internationalspeaking and spending the day at
the first ever dementia village.
Oh my goodness.
Attorney Bob Mannor (13:54):
Yeah, right outside of Amsterdam.
Yeah, it's in.
Carrie Aalberts (13:56):
Weeps, netherlands, and I have a day
study there and we're podcastinglive from there.
So, definitely follow along.
We want to bring back as fourof us professionals and talk
about how we can recreate ithere or not, or what's the
possibilities.
Attorney Bob Mannor (14:10):
I want you to talk a little bit more about
that.
I'm actually also going to theDementia Village in Amsterdam
next May, so tell our listenersa little bit more about that,
because it's a reallyinteresting concept.
Carrie Aalberts (14:25):
I'm so glad you're going.
This is a dream of mine.
I've been studying it since Iwas 19 and I can't believe I get
to go.
So the dementia village, hogvik, which I have learned since I
have, you know, gotten ready togo over there is that they don't
like being called a village.
They actually don't want to becalled a village, and so that's
(14:46):
something we're going to learnmore about and how to maybe
change the vocabulary in the US.
But a US publication dubbedthem that and it got it stuck
and they didn't have any say.
Attorney Bob Mannor (14:58):
So they want to be Hogovic.
Carrie Aalberts (14:59):
That's it.
It doesn't mean anything.
So that was something new to meand they are a place where it's
literally a community for peopleliving with dementia to live in
, where it's their own town, sothey can live independently and
autonomously.
But the people in the town areall caregivers, so it's these
professional caregivers around.
They're there, you know, forany help that is needed.
(15:21):
But people actually get to gooutside and go to the market and
do things for themselves andhave that independence.
And I did see a stat and I wantto look more into it.
But someone said this to me andI was like what they said?
They did a study and like it's,people living at Haguevik lived
five times longer or something.
I don't know, so I need to lookmore into it, but it's something
(15:45):
to say about independence orhaving autonomy as long as
possible in your progression,and it's about quality of life.
Attorney Bob Mannor (15:52):
And.
Carrie Aalberts (15:52):
I think that is the most incredible vision for
what it should be for people,but there's a reason why we
don't see it anywhere else.
So what is that?
So I will hopefully find thatout.
Attorney Bob Mannor (16:03):
Yeah, no, very interesting.
We had a guest on the podcast afew months ago that they're
part of an organization thatdoes therapies for people with
neurodegenerative disorders,including dementia, and his
thought and something that heexpressed was a lot of families,
when they get this diagnosis ofdementia, they kind of cocoon
(16:25):
and they don't.
They don't they.
You know they just kind of hidein the house and then they're
not getting those services, andhe was expressing how there are
a number of things to make lifebetter, make life more livable
for both the person withdementia and the family and a
lot of families just kind ofclose in and that in, and that
he was saying the same thing asyou, that it actually probably
(16:47):
shortens their life and theshorter period of life is less
livable, meaning it's.
You know, when we can have morethings that can make it easier
and make it easier for thefamily, not only can they extend
their life, but it can extendtheir life in a much more
enjoyable fashion, both for theperson and their family.
Carrie Aalberts (17:08):
Absolutely Something.
An example of this and just ona really specific level and just
to go deeper into that when wedo things for people, just if
they're aging, living withdementia, whatever we do things
for them before they need helpwith those things yes we take
away that, those abilities, fromthem.
So, for example, I worked in asenior living community where we
(17:31):
were so short-staffed surprise,surprise and it was we couldn't
walk people.
You know well, I was inactivities, I watched this, not
that I'm like not taking blameor anything, but this is how it
was and we, we would see peoplebe put in wheelchairs instead of
taking the time to walk them todinner.
And then eventually, they lostthe ability to walk faster
(17:51):
because we didn't give them theopportunity to walk.
So not giving people theopportunity to do things
actually takes away theirautonomy.
So helpful for caregivers.
Support that independence.
That's less for you to do atthis moment.
We want to support independence.
If you have to cue them, startthe process, that's fine, but
don't take away everything youknow.
Start with verbal cuing beforeyou go into physical cuing.
(18:14):
All those types of things help.
Attorney Bob Mannor (18:15):
Yeah, that's a good tip.
Actually, I'm going to ask youto give us a few more tips.
So, for example, a family thatyou know, we see this all the
time, whether it's a parent or aspouse, but sometimes it's a
matter well, let's go with.
I'll give you two examples andwe'll take them one at a time.
One is you know, george is justbeing stubborn, or Alice has,
(18:37):
you know, she's just, she's just, you know, being ornery, or
whatever you know, and that theybecause there's sort of all of
the history of before they haddementia.
Sometimes the somebody reallyclose is having a hard time
accepting that this isn't justsomebody being grumpy, right.
Carrie Aalberts (18:55):
Yes, and it's.
That's why, truly, one of theacts of self-care for a
caregiver is to learn about yourloved one's disease, because
the more we know, the better wecan separate our loved one from
what is happening.
And you know, understandingwhat is happening in their brain
(19:17):
is a game changer for acaregiver, because it takes away
that.
Are they doing this on purpose,are they?
Are they trying to piss me off?
And it's like they literally donot have that ability anymore
and that's so hard to understandand it's heartbreaking, right?
You don't want to want tounderstand that, your loved one,
their brain has deteriorated toa point where they cannot
(19:41):
process things they have alwaysbeen able to.
So yeah, for example, yeah,they're being stubborn, they
don't want to eat no.
Part of their brain probablyhas gone to the point where they
don't know what to do with aspoon.
So, we want to put that spoon inthe cereal and that could be
enough to cue them and okay, andfill in that blank.
(20:01):
But it's so hard becauseeveryone's so different.
With their dementia, as we know, every person is unique.
Every person's progression isdifferent.
Not everyone, you know, willwill experience the same things,
but it's that I see that allthe time, especially in the
beginning and mid stages whenyou're just when people just
think they're doing it onpurpose and that makes it so
(20:22):
hard, and then the guilt on theperson.
It makes them want to isolatemore, because then they feel
like they're doing stuff.
That's wrong too.
But yeah, it's really aboutunderstanding the deficiencies
in the brain that are happening.
What parts of the brain arebeing affected and,
unfortunately, you know thelogical thinking and you know
being able to process differentthings.
(20:45):
They have to do different tasks.
Confabulation is somethingwhere you know your brain
literally has like some memories, but then part of your brain
doesn't, so it just makes upstuff and fills in the blanks.
And so people say they're lyingand it's like no, because their
brain told them that's correct.
They're not trying to lie.
They like, for example, I had agentleman that always thought
(21:07):
he he went to space everymorning and but it was like it
was because his TV like he wouldalways fall asleep to like the
space channel.
Attorney Bob Mannor (21:15):
or I don't know what it was.
Carrie Aalberts (21:16):
But he would wake up with this space picture,
and so it made sense.
His, his brain put thattogether as oh, he was in space,
so something made sense there.
So we have to look at the fullpicture and realize it is not on
purpose.
Attorney Bob Mannor (21:30):
Their brain is trying the best that it can
to make up for things yeah, no,it's always interesting how the
brain works, and I think there'sa whole lot about the brain
that we don't understand butit's definitely always trying to
figure something out, even whenit doesn't have the resource,
it doesn't have the short-termmemory of the resources it's
trying trying to figure outsomething to put some make sense
(21:51):
of everything so it's amazingwhat it can do.
Carrie Aalberts (21:55):
it really is fascinating when you can like
pull yourself apart from thepersonal aspect or just like.
This is fascinating, it reallyis, yeah.
Attorney Bob Mannor (22:04):
You know, it's heartbreaking, but it also
can be fascinating if you reallythink about it from that kind
of the distance there.
But I have another questionthat might be helpful for
families.
That's somewhat similar, butthis is particularly and it
sometimes is between spouses,but often it's a child, and I
think most children, you knowthey grew up they never thought
(22:24):
or imagined that they would bemaking decisions for their
parent without their parentagreeing to those decisions.
And so here's what I see allthe time the child using logic
to try to convince them ofsomething.
Or just you know, and in myexperience, often they can right
, we can talk about okay, well,this is really important.
(22:48):
You know, you can't be drivinganymore because it's unsafe, it
could hurt other people, itcould hurt you.
Hey, we need to look at bringingin a caregiver or something
like that, because you know,remember when you fell back a
few months ago, or and there'slots of logic that we can use
and when I?
The problem I see with that is,you know, two things Number one
is the ability to have thatlogical reasoning or executive
(23:12):
decision making.
But the second thing, even ifthey can put that together and
say, yeah, I see, I guess you'reright.
They're not going to rememberthat the next day.
So there's this constant everyday, trying to convince them of
something that is not going tostick.
And so how do you address, howdo you help families that are
dealing with that need or thatconcern?
Carrie Aalberts (23:33):
Oh, it's so hard.
And one thing I just want tosay about yes, it doesn't always
work Sometimes, oh my gosh, yesit does.
That's awesome If you can saythe safety aspect and that works
great.
You know it's so hard tobecause, like you said, you
can't reason.
You never reason with someoneliving with dementia.
You're never going to win,you're just going to be
frustrated because literallytheir brain cannot reason
(23:56):
anymore.
That's not something that isavailable to them, like you said
.
So this is really hard andthat's where improv skills and
your creativity comes into play.
And unfortunately, there'sreally not a blanketed statement
because I can say you leave anote out to remind them.
Some people don't get to apoint where they can't read, or
(24:16):
they they just won't read it, oryou know I've also had, you
know where, families that havehad to take out the engine.
Attorney Bob Mannor (24:23):
So they want to go.
Carrie Aalberts (24:24):
And then the man figured out how to put the
engine back in.
Attorney Bob Mannor (24:27):
He got down the road it was brilliant.
Carrie Aalberts (24:29):
I mean I was impressed, but it was very scary
.
So you know it's.
It's so hard because you haveto know your person and so I
think you know if there's a waythat you can say you know, we
have, you have vouchers for Uberand we need to use them and you
have that out or somethingwhere you have, you know there
has to be that consistentincentive that works for them.
(24:51):
And that needs to be veryvisible, if you know.
But unfortunately somethingthat is hard to get around is
that repetitiveness.
It's usually coming from partof them that just has that needs
control and they don't havecontrol, so you can't really
redirect it.
Sometimes you honestly have towait it out until it is
forgotten about.
(25:12):
I don't have like a foolproofthing for that, because it's
just so hard.
But yeah, not having the keysvisible, you know where they
would hang usually don't havethose things readily visible.
If they really let, if you thinkmaybe something's triggering
that you know to ask about thecar, maybe they see the purse
out or your coat out puteverything that's like travel
things away, put anything thatmight indicate you're going in
(25:35):
the car away.
So it's not a thought,hopefully, but it's so
individual it's so hard, butyeah, the repetitiveness.
I wish there was like a good tip, but finding the main source of
where that's coming from, andwe would know in this it's not
having their car.
So I'm trying to, you know,replace it with something that
(25:57):
we can't.
Replace it with another vehicle, but something else to focus on
that they care about can be anice replacement, but it's so
hard.
Attorney Bob Mannor (26:08):
It is hard and one of the things I think
that's hard for the children issometimes you just have to make
a decision Like the car's notgoing to be at the house, or
make decisions of we're going tohave a decision like the car's
not going to be at the house, ormake decisions of we're going
to have a caregiver or we'regoing to look at a care setting
that is safe and that there isno convincing dad that this is
(26:28):
the right choice or convincingmom that this is the right
choice, because you might beable to do it, but it won't
stick necessarily, and sosometimes you have to dab that
uncomfortable thing of we'regoing to have to make a decision
because we're never going to beable to convince dad every day
that he shouldn't be driving.
So the decision is we're goingto remove the car from the house
.
It's not going to be there,it's not an option, those types
(26:51):
of things.
Carrie Aalberts (26:51):
I say all the time you're going to have to be
the bad guy.
And when you can let someoneelse be the bad guy, like the
lawyer, like the DMV person,whoever the doctor, get them in
on it, Because the caregiver,you know, takes the brunt of
everything you know what.
At the end of the day, I'drather my mom hate me for a
little bit than her hit someonein the car.
(27:14):
Yeah, exactly, and so you haveto be the bad guy.
It doesn't make you the bad guy, it actually makes you the good
guy, but you're the bad guy intheir eyes, but you're the good
guy keeping them safe.
And I never and I'm never likesaying they're the same at all.
You know parents and you knowtaking care of children.
It's not the same at all.
But just like when my parentsdidn't let me go to that
(27:34):
dangerous party when I wasteenage and I was pissed off
about it and but it was.
You know, later on I'm so glad Ididn't go because the cops came
and I wasn't.
You know what I'm saying?
Like we need to think aboutthey would do that for us.
So we need to do that for thembecause they literally cannot
make that decision safelyanymore.
Attorney Bob Mannor (27:51):
So you know one of the things that, partly
through COVID but partly justhow things have developed
there's so much more opportunityto get good information and get
resources.
So you know it's nice to have alocal support group or you know
things like that.
But it's nice to have you know,like Dementia, darling and
(28:12):
things like that, where you canget information.
And, like you said, you'regoing to be over in Europe doing
some teaching and such and thenice thing is you don't have to
have, you don't have to get allof your resources locally.
So there's great information.
There's great people in thisindustry that are trying to help
folks and, just you know, haveeven just sort of society
understand this a little bitbetter.
(28:33):
And now I think there's an evenmore opportunity since COVID of
realizing that, just becauseyou're in Nevada and we're here
in Michigan, your advice isstill as good as ours.
Carrie Aalberts (28:43):
Yeah, no, it blows my mind.
You know, I see where peopleare from on my website and, like
yesterday, India, Africa, youknow just everywhere.
And it's like dementia doesn'tdiscriminate.
You know, I have celebritiesasking me the same questions in
my.
Dms.
Everyone, everyone's seekinghelp and I really truly learned
(29:06):
the most from following familycaregivers.
There are so many amazing familycaregivers showing day-to-day
life in real, raw form on socialmedia and they're incredible.
Highly recommend finding people.
And, like you said, there's somany great support groups
there's and you can find a lotof people say, oh, I don't like
(29:28):
support groups, I didn't seemyself in them.
Find a specific support group.
You know there's the hilarityfor charity Seth Rogan and his
wife have.
I work with them and they'reincredible and they have
specific, you know, millennialsupport groups, male caregiver
support groups, black caregiversupport groups.
I mean the best and you canfind your people.
Do not give up.
I know it's hard in another jobyou have to do, but it's worth
(29:51):
every second.
Attorney Bob Mannor (29:52):
Yeah, I agree with you entirely, it's.
It's interesting.
You talk about the differentpeople that follow your website
and follow your things.
I think, uh, when we werelooking at our statistics of
who's downloading our podcastadvice from your advocates, the
second biggest uh country wasgermany, and we're not quite
sure why, but behind the headsgermany is the second.
We're very popular sointeresting yeah that is so
(30:16):
interesting.
Carrie Aalberts (30:17):
I know the biggest city after LA for me
that follows me is Lagos.
Attorney Bob Mannor (30:22):
Oh, interesting.
Carrie Aalberts (30:23):
Wow, I hope I'm saying it right, but I'm like
okay, I'm like that's random, soyeah, you never know, you never
know who you're helping to you.
Attorney Bob Mannor (30:42):
You have some really great options and
just I really like the shorteducation opportunities and
getting it out to people in waysthat are non-threatening and
that they don't have to committo more than a couple minutes.
So I appreciate everything thatyou do.
Carrie Aalberts (30:54):
Thank you.
Same to you.
We need more elder lawattorneys.
We need more elder lawspecifics.
I mean, people are so lost outthere and get taken advantage of
every day.
You know, being able to findpeople that have this expertise
and that actually care aboutthis specific group is really
special, so thank you.
Attorney Bob Mannor (31:15):
Yeah, and that's very true.
You know, it's one of thosethings where there's lots of
attorneys.
Actually, it's one of thosethings where there's lots of
attorneys Actually it's a prettysmall group of attorneys that
even do anything related tolong-term care and.
Medicaid and veterans benefitsand things like that.
But the standard is the lawyersare just doing the legal part
or helping with the financialpart or things like that, and
(31:37):
the reality, when you get intothis, is there's more to it.
There's more, you know, there'sa need for advocacy.
There's need for assistance tothe maze of long-term care of
how to get to care.
And so that's where there's asmall, much smaller group of us
that look at it as more of aholistic practice, where we're
looking at not just the money,not just the legal documents,
(31:59):
but also, you know, looking atthe big picture and just trying
to get the best results, bestfamily quality of life that you
can get.
Carrie Aalberts (32:06):
So we need more of you.
I mean, so many people don'tknow where to turn.
I'm sure, as you know, theyturn to someone or find someone
too late.
Sometimes with certain things,with dementia care, that can
make it really really, reallydifficult, and it's, you know,
as people are going through thisis often the hardest time of
their lives, and so to findprofessionals along the journey
(32:28):
that have just just see you ishuge.
Yeah, and cater to that yeah.
Attorney Bob Mannor (32:35):
Final thoughts or final tips you want
to give our listeners.
Carrie Aalberts (32:39):
I we kind of touched on it with the energy a
little bit but meet your peoplewhere they are, meet your loved
ones where they are.
It's.
I know it's easier said thandone, but I like to just say
this as because it's helped alot of people.
You know, I often have, youknow, family members.
Let's say we often seedaughters caring for parents,
right, and let's say, often hereyou know a daughter say, oh, my
(33:01):
mom thinks I'm her mom now.
Attorney Bob Mannor (33:04):
Right.
Carrie Aalberts (33:04):
Or I'm her sister or her grandma, and
that's really hard, heck.
Yeah, that's hard, valid, thatis heartbreaking.
But I want you to think of itlike this Wow, your mom is in a
place in her head first off,where you're not born yet.
Now, your mom is in a place inher head first off where you're
not born yet.
Attorney Bob Mannor (33:20):
Just so you know.
Carrie Aalberts (33:20):
So that's first off, like she's reverted back
in her brain to where maybe shewas at home and she just sees
her sister and her mom now, ormaybe she lives with grandma,
what have it be.
But you weren't in thattimeline yet.
So one, don't take itpersonally in that sense, if you
(33:42):
can look at it that way.
And then two, how cool is itthat?
you're her safe space, now thatshe sees you as that loved one
from that other time period.
How cool that you're her safespace, that now you're her mom,
she loves her mom and she's nowseeing you as that loved one.
And so to look at it in thatway and to be like, wow, I'm
still her person, even though Imight not be called the same
name, I'm still that person shesees as her safety net, and I
(34:03):
think that's a beautiful thingand it's just with the fact of
seeing you know oh, I wasn'teven part of that timeline for
her yet is a really big aha forpeople.
I think too, in the sense, thatit's not that she forgot you
necessarily.
She's literally back in time.
You know what I'm saying so it'sa whole different kind of way
(34:23):
to look at that.
So I like to leave people withthat kind of just to think about
, but also know that you'revalid and that this is the
hardest thing ever.
And please give yourself gracewhen guilt comes on, when the
grief is too rough, when youfeel like you're hitting your
burnout point.
Please, you know, please,please care for yourself,
(34:44):
because if something happens toyou, you know what's going to
happen to the people that youcare for too, so we have to make
sure we're caring for yourself.
That is an act of love to thepeople you're caring for when
you care for yourself.
Attorney Bob Mannor (34:56):
Absolutely Very well said.
Well, thank you, carrie fromDemented Darling.
Thank you and this has beenAdvice from your Advocates.
If you enjoyed this podcast andyou want to know when we have
future ones, feel free tosubscribe to Advice from your
Advocates on any of the podcastplaces that you listen to a
podcast, or you can go to ourwebsite at manorlawgroupcom.
You're listening to Advice from your
Advocates, a show where weprovide elder law advice to
professionals who work with theelderly and their families.
Attorney Bob Mannor (00:10):
Welcome back to Advice from your
Advocates.
I'm Bob Manor.
I'm a certified elder lawattorney in Michigan and I've
been looking forward to thispodcast.
This is going to be a reallyinteresting one.
So we've got Carrie Alberts.
She's an educator and advocatefor dementia issues and she has
a really interesting socialmedia presence and website
called Dementia Darling.
(00:31):
So Keri welcome.
Carrie Aalberts (00:33):
Thank you so much for having me.
It's an honor to be here andtalk.
Attorney Bob Mannor (00:37):
So tell us about the work that you do
through DementiaDarlingcom.
Carrie Aalberts (00:41):
Yeah, I have been on social media under the
persona dementia darling foralmost five years.
In October it'll be five yearsand I wanted to create a safe
place for dementia caregiversand, of course, all caregivers
are welcome but I specificallywork with dementia caregivers
and I consistently in my journeyfound that dementia caregivers
(01:03):
felt very isolated.
Consistently in my journey,found that dementia caregivers
felt very isolated and I wantedto have a place that was a safe
place for them to feel seen, tofind resources and truly to give
them a virtual hug and sayyou're doing amazing and you're
not alone in this and reallyhelp build community for them.
So that's what I've done andnow I'm full-time.
(01:24):
Dementia darling, 24-7, is myjob.
Attorney Bob Mannor (01:28):
That's great.
You know it's interesting youtalk about that, that it can be
for any caregiver, and you knowwe have the same thing.
So we, for the last few years,we've been saying we're a
dementia-focused law practiceand the way we came to that was
that you know, I help a lot ofpeople with long-term care and
finding the right long-term care, making sure that we're
advocating for good care,finding ways to pay for it, all
(01:50):
those types of things.
But the bottom line was, aftera while, we realized that a good
percentage probably 75% or moreof the families that we're
helping were dealing withsomeone with dementia, and so
once we realized that, we said,well, maybe we should say that
and say that this is a lot ofthe people that are going to be
struggling that this have afamily member with dementia, and
(02:10):
that complicates things right.
Carrie Aalberts (02:12):
Yes, yes, and we don't see that in society
enough.
We don't see dementia out there, and so that means the world
that you guys were able to tapinto that and see the need.
And now you make people feelseen by that and I just
appreciate you because, like yousaid, it's such a difficult
journey to navigate.
I mean, aging is difficult tonavigate in general, being a
(02:34):
human is difficult to navigatein general.
Now let's throw on top dementia, right, and all that comes with
that.
So, yes, having supportiveprofessionals that really truly
understand the struggle is agame changer during the journey.
Attorney Bob Mannor (02:49):
I really appreciate the education and you
know the way that you do it,where you're getting out into
social media and you're gettingyou know kind of the message out
.
This is very difficult forfamilies to navigate.
So if you know some of the alot of the caregivers, I'm sure
that you work with our familycaregivers.
So of course there's going tobe some paid professional
caregivers, but a lot of themare the family caregivers and
(03:10):
this is so strange for thembecause the person that they're
caregiving for you know theirdad or their mom or their spouse
or their grandparent orwhatever, and sometimes it's
really hard to separate theprevious relationship from this
new relationship and justsupporting them and educating
them about you know the best wayto deal with different
(03:34):
behaviors, different you know,things that come up.
That, I think, is great and Ilove how you do it, that you're
getting out.
It's not just you have to go tothis lecture in some lecture
hall.
You're getting out to the realfolks and real people and
getting this information out.
Carrie Aalberts (03:47):
We don't have time for that right.
We don't have time to go, sitin a day training and find
respite for our loved one andget there and all the things or
whatever.
Yes, I try to make it reallydigestible and it's confusing
for me and I've been in it for12 years and have a master of
science degree focused in it andstill is hard and I'm still
learning every day.
It is a completely new worldspecifically dealing with
(04:11):
dementia, and people need thatsupport, and we don't know until
we know.
So if you can, you know, watcha tick tock for 30 seconds once
a day and learn something thatcould really, you know, help you
in your day to day life.
Caring for someone, man, that'sa win, so yeah.
Attorney Bob Mannor (04:29):
Yeah, and you know, lawyers are known for
being too wordy and using bigwords and talking too long and
all that, and that's somethingthat we've had to learn.
So we have a TikTok page thatwe, you know, has gone viral a
few times, and what?
We learned, but you got to getright to the point.
Carrie Aalberts (04:45):
You really have to get information out there an
entertaining but short, easy tounderstand way, and that's what
you do with the dementiaeducation, which is great, I'll
tell you, though it's verydifficult for me and you're
right, and that's actually howyou should communicate in
dementia care too.
You keep it really concise andto the point and clear.
Less words the better, and I'msomeone who I always joke.
(05:08):
I said they hated my eldershated me because I was too loud,
I talked too fast and I do allthe words.
So they're, you know, they'relike, oh my gosh, get this girl
away from me.
So I have to be very consciousof you know, an intentional when
I am, you know, doing that.
Attorney Bob Mannor (05:23):
Well, and I was reading about this the
other day and I'll see if youagree with that you know a lot
of the words.
So if someone is experiencingdementia, and a lot of times the
caregiver, the family or eventhe professional might be trying
to communicate something withthem and my what I was reading
in my personal experiences.
They might not be able toremember those words but they
(05:44):
can remember sort of the feelingthey had when you had those
words.
So if you're confusing them oroverwhelming them, that's the
feeling they have.
If you get to the point of theissue and dealing with it in a
in a way that they canunderstand sort of the emotions
of the situation.
I think that that is a muchmore effective communication.
Carrie Aalberts (06:02):
You are spot on .
They they will take whatever webring.
They take that on right.
So you have to really go intoit with the right energy.
And I say to caregivers you'reallowed to be in a place where
you don't think you should bearound them at that moment.
You're allowed to step away andtake a breath, because that is
(06:23):
fair.
You are human and you can'talways be on and perfect and all
the things and happy and we'regoing potty.
You know we can't always dothat and it's hard because it
does make or break a situation.
Dementia care, as you weresaying, you know, feeding off
their energy.
You know they might notremember you your name, but
they'll remember how you makethem feel and they will.
(06:44):
You know you your name, butthey'll remember how you make
them feel and they will, youknow if you.
You know it's so hard whensomeone has, like a negative,
you know, experience withsomeone and that just sticks
with them and then they kind ofbecome scared of that person.
That can happen a lot inprofessional care, you know, and
things like that.
So, yes, it's very important.
Attorney Bob Mannor (06:59):
So I'd like to know.
I know a little bit becauseI've done my research and I've
been following you for a bit nowbut I'd like our listeners to
know a little bit more about you, and how did you get into this?
What was your own personalexperience?
Things like that.
Carrie Aalberts (07:13):
Yeah, thank you for asking.
Well, so you'll like this.
So my dad is actually a realestate and so he was a real
estate lawyer and then abusiness law and ethics
professor his whole career UNLVin Penn State, and so that was
my life.
So when you said, yes, lawyerslike to use big words, I'm like,
(07:33):
yeah, I grew up in a home likethat was living with dementia my
dad's mom and she unfortunatelypassed away from dementia when
I was 13.
So please keep in mind, I wasyoung, didn't know what was
going on.
I was like what is going onwith grandma?
She's acting so strange, youknow no education around it, but
(07:56):
I could see my dad throughthose years as her main family
caregiver, who is a lawyer, whois a smart guy not knowing what
to do not knowing how tonavigate the system it's.
It is not easy for anyone.
Um, and and I even talked to, Ijust talked with a doctor.
She's a, she's a gerontologistand she's like, now that it's my
(08:17):
dad, like Jerry a gerophysiciansorry, she's full ball doctor
in this and she's like, now thatit's my dad, everything's gone
out the window.
So that's another thing too,it's hard when it's your family
right Absolutely true.
Right, and so I watched himnavigate this and he did an
amazing job.
But it was really hard.
He was on his own, he was doingthis and I'm just so glad to
see that there are thingsavailable now and there's more
(08:40):
talking about it.
Still such a long way to go,but I didn't ever understand.
I just know it was verystressful for my father.
It was a hard time for my dadand it definitely was affecting
the family, watching my grandmaprogress and her birthday was on
Christmas Day.
So you know it's like everyChristmas.
You know, during my teenageyears it was like watching her
(09:02):
kind of just progress into thisdisease and not being able to
engage with us on the bigholiday and her birthday and I
just remember that so vividly.
But I'm so grateful for thetime we had with her and what I
learned through it.
But that always stuck with meand I was able to go to a
college that had a program ingerontology, the study of aging.
(09:23):
So I was like, sign me up.
So I have my bachelor andmaster's degrees focused in
gerontology, the study of agingand family studies as a whole
and just the progression ofbeing a human across the
lifespan.
And I just I fell in love.
During my time in my internshipsI started and I stayed there my
(09:44):
whole college career at anintergenerational adult daycare
center.
So there was little kids,preschool and then the elders
with dementia, mainly in theother end, and we would meet
twice a day for snacks and itwas just, it filled your soul
and that solidified my passion.
And then I, you know, wentthrough and worked in senior
living, worked in nonprofits.
(10:05):
I ended during COVID in as adirector of an adult daycare
center out here in Vegas where Ilive and ended up getting
really burnt out and so Iswitched over to the age tech
world.
I went to the age techengagement kind of sector of
(10:32):
senior living and finding reallycool tech that keeps people
happy and gives them, you know,fun things to do.
And through that time I'vereally learned a lot about the
different things that are beingmade for people living with
dementia, the types of play thatare available for people living
with dementia.
People living with dementia,like a fun fact, there's like 22
different types of play thatyou and I can enjoy in life, but
people living with dementia canonly experience about three
types of play.
So it's really, you know,learning how to meet your person
(10:52):
where they're at.
But yeah, all through this timedoing dementia darling and just
trying to build up a safe placeand resources and all the
things that was really long, butI uh you know, I tried to um
just keep learning and and shareuh all that I've learned along
the way um with caregivers,because every single day there's
(11:15):
new people coming on thisjourney.
We have over uh 53 millionfamily caregivers unpaid
caregivers in the U S Wow.
Attorney Bob Mannor (11:22):
Wow, yeah, no, and you know it's
interesting, the dynamics ofwhat's coming along, and you
know this is something that'snot going to go away and I don't
think that we've done a verygood job of preparing families
for this stage of Not at all Oneof the things I always say, and
(11:43):
this is going to sounddepressing, but it's just real
and I like people to justacknowledge it.
So there's three possiblefutures.
You're going to either, youknow, live a really long life
and and never really have anyserious illness and die
peacefully in your sleep andthat does happen, but it's very
rare.
Yeah, option two is you coulddie young and that's not so good
(12:04):
.
And option three is you'reprobably going to have some
period of time before you diethat you're going to be
dependent on other people and wejust don't prepare for that
time period and families don'twrap their head around that idea
, and it's something that Ithink that you know.
I guess previous generationsdidn't have to deal with this
much because people died younger, things like that.
But I really think that you knowthere's so much about you know
(12:28):
preparing for different stagesin your life, preparing for
having children, preparing forgetting married, preparing for
retiring, and then we have thisimportant last stage of life
that everybody just kind oflooks right through and imagines
it doesn't exist.
And so I really what you'redoing and educating folks about
the reality of this.
Tell us a little bit more ofhow people might be able to
(12:49):
engage with Dementia Darling.
There's different resourcesthrough social media, but what
else can they do to engage?
Carrie Aalberts (12:56):
Well, I'm definitely coolest on Instagram
and that's where I post the most, but at Dementia Darling on
there.
And then you know Facebook,tiktok, all the things, linkedin
, but yeah, I have.
At Dementia Darling on there,and then you know Facebook,
tiktok, all the things, linkedin.
But yeah, I have aDementiaDarlingcom and I try to,
you know, put up resources.
And then, if you want to join my, mailing list on there I send
out, you know resources anddifferent things that I learn
about and I I try to share asmuch as possible everything
(13:19):
that's out there for caregivers,all the free things, all the
amazing resources and companiesand people that are popping up.
So, yeah, my website, for sure,and I also have a podcast
called Gather Darlings with myamazing bestie that's also in
the aging industry and isamazing at what she does.
Yeah, and it's going to be fun,definitely follow.
(13:41):
I'm heading next month for amonth away in Europe for work
and doing some internationalspeaking and spending the day at
the first ever dementia village.
Oh my goodness.
Attorney Bob Mannor (13:54):
Yeah, right outside of Amsterdam.
Yeah, it's in.
Carrie Aalberts (13:56):
Weeps, netherlands, and I have a day
study there and we're podcastinglive from there.
So, definitely follow along.
We want to bring back as fourof us professionals and talk
about how we can recreate ithere or not, or what's the
possibilities.
Attorney Bob Mannor (14:10):
I want you to talk a little bit more about
that.
I'm actually also going to theDementia Village in Amsterdam
next May, so tell our listenersa little bit more about that,
because it's a reallyinteresting concept.
Carrie Aalberts (14:25):
I'm so glad you're going.
This is a dream of mine.
I've been studying it since Iwas 19 and I can't believe I get
to go.
So the dementia village, hogvik, which I have learned since I
have, you know, gotten ready togo over there is that they don't
like being called a village.
They actually don't want to becalled a village, and so that's
(14:46):
something we're going to learnmore about and how to maybe
change the vocabulary in the US.
But a US publication dubbedthem that and it got it stuck
and they didn't have any say.
Attorney Bob Mannor (14:58):
So they want to be Hogovic.
Carrie Aalberts (14:59):
That's it.
It doesn't mean anything.
So that was something new to meand they are a place where it's
literally a community for peopleliving with dementia to live in
, where it's their own town, sothey can live independently and
autonomously.
But the people in the town areall caregivers, so it's these
professional caregivers around.
They're there, you know, forany help that is needed.
(15:21):
But people actually get to gooutside and go to the market and
do things for themselves andhave that independence.
And I did see a stat and I wantto look more into it.
But someone said this to me andI was like what they said?
They did a study and like it's,people living at Haguevik lived
five times longer or something.
I don't know, so I need to lookmore into it, but it's something
(15:45):
to say about independence orhaving autonomy as long as
possible in your progression,and it's about quality of life.
Attorney Bob Mannor (15:52):
And.
Carrie Aalberts (15:52):
I think that is the most incredible vision for
what it should be for people,but there's a reason why we
don't see it anywhere else.
So what is that?
So I will hopefully find thatout.
Attorney Bob Mannor (16:03):
Yeah, no, very interesting.
We had a guest on the podcast afew months ago that they're
part of an organization thatdoes therapies for people with
neurodegenerative disorders,including dementia, and his
thought and something that heexpressed was a lot of families,
when they get this diagnosis ofdementia, they kind of cocoon
(16:25):
and they don't.
They don't they.
You know they just kind of hidein the house and then they're
not getting those services, andhe was expressing how there are
a number of things to make lifebetter, make life more livable
for both the person withdementia and the family and a
lot of families just kind ofclose in and that in, and that
he was saying the same thing asyou, that it actually probably
(16:47):
shortens their life and theshorter period of life is less
livable, meaning it's.
You know, when we can have morethings that can make it easier
and make it easier for thefamily, not only can they extend
their life, but it can extendtheir life in a much more
enjoyable fashion, both for theperson and their family.
Carrie Aalberts (17:08):
Absolutely Something.
An example of this and just ona really specific level and just
to go deeper into that when wedo things for people, just if
they're aging, living withdementia, whatever we do things
for them before they need helpwith those things yes we take
away that, those abilities, fromthem.
So, for example, I worked in asenior living community where we
(17:31):
were so short-staffed surprise,surprise and it was we couldn't
walk people.
You know well, I was inactivities, I watched this, not
that I'm like not taking blameor anything, but this is how it
was and we, we would see peoplebe put in wheelchairs instead of
taking the time to walk them todinner.
And then eventually, they lostthe ability to walk faster
(17:51):
because we didn't give them theopportunity to walk.
So not giving people theopportunity to do things
actually takes away theirautonomy.
So helpful for caregivers.
Support that independence.
That's less for you to do atthis moment.
We want to support independence.
If you have to cue them, startthe process, that's fine, but
don't take away everything youknow.
Start with verbal cuing beforeyou go into physical cuing.
(18:14):
All those types of things help.
Attorney Bob Mannor (18:15):
Yeah, that's a good tip.
Actually, I'm going to ask youto give us a few more tips.
So, for example, a family thatyou know, we see this all the
time, whether it's a parent or aspouse, but sometimes it's a
matter well, let's go with.
I'll give you two examples andwe'll take them one at a time.
One is you know, george is justbeing stubborn, or Alice has,
(18:37):
you know, she's just, she's just, you know, being ornery, or
whatever you know, and that theybecause there's sort of all of
the history of before they haddementia.
Sometimes the somebody reallyclose is having a hard time
accepting that this isn't justsomebody being grumpy, right.
Carrie Aalberts (18:55):
Yes, and it's.
That's why, truly, one of theacts of self-care for a
caregiver is to learn about yourloved one's disease, because
the more we know, the better wecan separate our loved one from
what is happening.
And you know, understandingwhat is happening in their brain
(19:17):
is a game changer for acaregiver, because it takes away
that.
Are they doing this on purpose,are they?
Are they trying to piss me off?
And it's like they literally donot have that ability anymore
and that's so hard to understandand it's heartbreaking, right?
You don't want to want tounderstand that, your loved one,
their brain has deteriorated toa point where they cannot
(19:41):
process things they have alwaysbeen able to.
So yeah, for example, yeah,they're being stubborn, they
don't want to eat no.
Part of their brain probablyhas gone to the point where they
don't know what to do with aspoon.
So, we want to put that spoon inthe cereal and that could be
enough to cue them and okay, andfill in that blank.
(20:01):
But it's so hard becauseeveryone's so different.
With their dementia, as we know, every person is unique.
Every person's progression isdifferent.
Not everyone, you know, willwill experience the same things,
but it's that I see that allthe time, especially in the
beginning and mid stages whenyou're just when people just
think they're doing it onpurpose and that makes it so
(20:22):
hard, and then the guilt on theperson.
It makes them want to isolatemore, because then they feel
like they're doing stuff.
That's wrong too.
But yeah, it's really aboutunderstanding the deficiencies
in the brain that are happening.
What parts of the brain arebeing affected and,
unfortunately, you know thelogical thinking and you know
being able to process differentthings.
(20:45):
They have to do different tasks.
Confabulation is somethingwhere you know your brain
literally has like some memories, but then part of your brain
doesn't, so it just makes upstuff and fills in the blanks.
And so people say they're lyingand it's like no, because their
brain told them that's correct.
They're not trying to lie.
They like, for example, I had agentleman that always thought
(21:07):
he he went to space everymorning and but it was like it
was because his TV like he wouldalways fall asleep to like the
space channel.
Attorney Bob Mannor (21:15):
or I don't know what it was.
Carrie Aalberts (21:16):
But he would wake up with this space picture,
and so it made sense.
His, his brain put thattogether as oh, he was in space,
so something made sense there.
So we have to look at the fullpicture and realize it is not on
purpose.
Attorney Bob Mannor (21:30):
Their brain is trying the best that it can
to make up for things yeah, no,it's always interesting how the
brain works, and I think there'sa whole lot about the brain
that we don't understand butit's definitely always trying to
figure something out, even whenit doesn't have the resource,
it doesn't have the short-termmemory of the resources it's
trying trying to figure outsomething to put some make sense
(21:51):
of everything so it's amazingwhat it can do.
Carrie Aalberts (21:55):
it really is fascinating when you can like
pull yourself apart from thepersonal aspect or just like.
This is fascinating, it reallyis, yeah.
Attorney Bob Mannor (22:04):
You know, it's heartbreaking, but it also
can be fascinating if you reallythink about it from that kind
of the distance there.
But I have another questionthat might be helpful for
families.
That's somewhat similar, butthis is particularly and it
sometimes is between spouses,but often it's a child, and I
think most children, you knowthey grew up they never thought
(22:24):
or imagined that they would bemaking decisions for their
parent without their parentagreeing to those decisions.
And so here's what I see allthe time the child using logic
to try to convince them ofsomething.
Or just you know, and in myexperience, often they can right
, we can talk about okay, well,this is really important.
(22:48):
You know, you can't be drivinganymore because it's unsafe, it
could hurt other people, itcould hurt you.
Hey, we need to look at bringingin a caregiver or something
like that, because you know,remember when you fell back a
few months ago, or and there'slots of logic that we can use
and when I?
The problem I see with that is,you know, two things Number one
is the ability to have thatlogical reasoning or executive
(23:12):
decision making.
But the second thing, even ifthey can put that together and
say, yeah, I see, I guess you'reright.
They're not going to rememberthat the next day.
So there's this constant everyday, trying to convince them of
something that is not going tostick.
And so how do you address, howdo you help families that are
dealing with that need or thatconcern?
Carrie Aalberts (23:33):
Oh, it's so hard.
And one thing I just want tosay about yes, it doesn't always
work Sometimes, oh my gosh, yesit does.
That's awesome If you can saythe safety aspect and that works
great.
You know it's so hard tobecause, like you said, you
can't reason.
You never reason with someoneliving with dementia.
You're never going to win,you're just going to be
frustrated because literallytheir brain cannot reason
(23:56):
anymore.
That's not something that isavailable to them, like you said
.
So this is really hard andthat's where improv skills and
your creativity comes into play.
And unfortunately, there'sreally not a blanketed statement
because I can say you leave anote out to remind them.
Some people don't get to apoint where they can't read, or
(24:16):
they they just won't read it, oryou know I've also had, you
know where, families that havehad to take out the engine.
Attorney Bob Mannor (24:23):
So they want to go.
Carrie Aalberts (24:24):
And then the man figured out how to put the
engine back in.
Attorney Bob Mannor (24:27):
He got down the road it was brilliant.
Carrie Aalberts (24:29):
I mean I was impressed, but it was very scary
.
So you know it's.
It's so hard because you haveto know your person and so I
think you know if there's a waythat you can say you know, we
have, you have vouchers for Uberand we need to use them and you
have that out or somethingwhere you have, you know there
has to be that consistentincentive that works for them.
(24:51):
And that needs to be veryvisible, if you know.
But unfortunately somethingthat is hard to get around is
that repetitiveness.
It's usually coming from partof them that just has that needs
control and they don't havecontrol, so you can't really
redirect it.
Sometimes you honestly have towait it out until it is
forgotten about.
(25:12):
I don't have like a foolproofthing for that, because it's
just so hard.
But yeah, not having the keysvisible, you know where they
would hang usually don't havethose things readily visible.
If they really let, if you thinkmaybe something's triggering
that you know to ask about thecar, maybe they see the purse
out or your coat out puteverything that's like travel
things away, put anything thatmight indicate you're going in
(25:35):
the car away.
So it's not a thought,hopefully, but it's so
individual it's so hard, butyeah, the repetitiveness.
I wish there was like a good tip, but finding the main source of
where that's coming from, andwe would know in this it's not
having their car.
So I'm trying to, you know,replace it with something that
(25:57):
we can't.
Replace it with another vehicle, but something else to focus on
that they care about can be anice replacement, but it's so
hard.
Attorney Bob Mannor (26:08):
It is hard and one of the things I think
that's hard for the children issometimes you just have to make
a decision Like the car's notgoing to be at the house, or
make decisions of we're going tohave a decision like the car's
not going to be at the house, ormake decisions of we're going
to have a caregiver or we'regoing to look at a care setting
that is safe and that there isno convincing dad that this is
(26:28):
the right choice or convincingmom that this is the right
choice, because you might beable to do it, but it won't
stick necessarily, and sosometimes you have to dab that
uncomfortable thing of we'regoing to have to make a decision
because we're never going to beable to convince dad every day
that he shouldn't be driving.
So the decision is we're goingto remove the car from the house
.
It's not going to be there,it's not an option, those types
(26:51):
of things.
Carrie Aalberts (26:51):
I say all the time you're going to have to be
the bad guy.
And when you can let someoneelse be the bad guy, like the
lawyer, like the DMV person,whoever the doctor, get them in
on it, Because the caregiver,you know, takes the brunt of
everything you know what.
At the end of the day, I'drather my mom hate me for a
little bit than her hit someonein the car.
(27:14):
Yeah, exactly, and so you haveto be the bad guy.
It doesn't make you the bad guy, it actually makes you the good
guy, but you're the bad guy intheir eyes, but you're the good
guy keeping them safe.
And I never and I'm never likesaying they're the same at all.
You know parents and you knowtaking care of children.
It's not the same at all.
But just like when my parentsdidn't let me go to that
(27:34):
dangerous party when I wasteenage and I was pissed off
about it and but it was.
You know, later on I'm so glad Ididn't go because the cops came
and I wasn't.
You know what I'm saying?
Like we need to think aboutthey would do that for us.
So we need to do that for thembecause they literally cannot
make that decision safelyanymore.
Attorney Bob Mannor (27:51):
So you know one of the things that, partly
through COVID but partly justhow things have developed
there's so much more opportunityto get good information and get
resources.
So you know it's nice to have alocal support group or you know
things like that.
But it's nice to have you know,like Dementia, darling and
(28:12):
things like that, where you canget information.
And, like you said, you'regoing to be over in Europe doing
some teaching and such and thenice thing is you don't have to
have, you don't have to get allof your resources locally.
So there's great information.
There's great people in thisindustry that are trying to help
folks and, just you know, haveeven just sort of society
understand this a little bitbetter.
(28:33):
And now I think there's an evenmore opportunity since COVID of
realizing that, just becauseyou're in Nevada and we're here
in Michigan, your advice isstill as good as ours.
Carrie Aalberts (28:43):
Yeah, no, it blows my mind.
You know, I see where peopleare from on my website and, like
yesterday, India, Africa, youknow just everywhere.
And it's like dementia doesn'tdiscriminate.
You know, I have celebritiesasking me the same questions in
my.
Dms.
Everyone, everyone's seekinghelp and I really truly learned
(29:06):
the most from following familycaregivers.
There are so many amazing familycaregivers showing day-to-day
life in real, raw form on socialmedia and they're incredible.
Highly recommend finding people.
And, like you said, there's somany great support groups
there's and you can find a lotof people say, oh, I don't like
(29:28):
support groups, I didn't seemyself in them.
Find a specific support group.
You know there's the hilarityfor charity Seth Rogan and his
wife have.
I work with them and they'reincredible and they have
specific, you know, millennialsupport groups, male caregiver
support groups, black caregiversupport groups.
I mean the best and you canfind your people.
Do not give up.
I know it's hard in another jobyou have to do, but it's worth
(29:51):
every second.
Attorney Bob Mannor (29:52):
Yeah, I agree with you entirely, it's.
It's interesting.
You talk about the differentpeople that follow your website
and follow your things.
I think, uh, when we werelooking at our statistics of
who's downloading our podcastadvice from your advocates, the
second biggest uh country wasgermany, and we're not quite
sure why, but behind the headsgermany is the second.
We're very popular sointeresting yeah that is so
(30:16):
interesting.
Carrie Aalberts (30:17):
I know the biggest city after LA for me
that follows me is Lagos.
Attorney Bob Mannor (30:22):
Oh, interesting.
Carrie Aalberts (30:23):
Wow, I hope I'm saying it right, but I'm like
okay, I'm like that's random, soyeah, you never know, you never
know who you're helping to you.
Attorney Bob Mannor (30:42):
You have some really great options and
just I really like the shorteducation opportunities and
getting it out to people in waysthat are non-threatening and
that they don't have to committo more than a couple minutes.
So I appreciate everything thatyou do.
Carrie Aalberts (30:54):
Thank you.
Same to you.
We need more elder lawattorneys.
We need more elder lawspecifics.
I mean, people are so lost outthere and get taken advantage of
every day.
You know, being able to findpeople that have this expertise
and that actually care aboutthis specific group is really
special, so thank you.
Attorney Bob Mannor (31:15):
Yeah, and that's very true.
You know, it's one of thosethings where there's lots of
attorneys.
Actually, it's one of thosethings where there's lots of
attorneys Actually it's a prettysmall group of attorneys that
even do anything related tolong-term care and.
Medicaid and veterans benefitsand things like that.
But the standard is the lawyersare just doing the legal part
or helping with the financialpart or things like that, and
(31:37):
the reality, when you get intothis, is there's more to it.
There's more, you know, there'sa need for advocacy.
There's need for assistance tothe maze of long-term care of
how to get to care.
And so that's where there's asmall, much smaller group of us
that look at it as more of aholistic practice, where we're
looking at not just the money,not just the legal documents,
(31:59):
but also, you know, looking atthe big picture and just trying
to get the best results, bestfamily quality of life that you
can get.
Carrie Aalberts (32:06):
So we need more of you.
I mean, so many people don'tknow where to turn.
I'm sure, as you know, theyturn to someone or find someone
too late.
Sometimes with certain things,with dementia care, that can
make it really really, reallydifficult, and it's, you know,
as people are going through thisis often the hardest time of
their lives, and so to findprofessionals along the journey
(32:28):
that have just just see you ishuge.
Yeah, and cater to that yeah.
Attorney Bob Mannor (32:35):
Final thoughts or final tips you want
to give our listeners.
Carrie Aalberts (32:39):
I we kind of touched on it with the energy a
little bit but meet your peoplewhere they are, meet your loved
ones where they are.
It's.
I know it's easier said thandone, but I like to just say
this as because it's helped alot of people.
You know, I often have, youknow, family members.
Let's say we often seedaughters caring for parents,
right, and let's say, often hereyou know a daughter say, oh, my
(33:01):
mom thinks I'm her mom now.
Attorney Bob Mannor (33:04):
Right.
Carrie Aalberts (33:04):
Or I'm her sister or her grandma, and
that's really hard, heck.
Yeah, that's hard, valid, thatis heartbreaking.
But I want you to think of itlike this Wow, your mom is in a
place in her head first off,where you're not born yet.
Now, your mom is in a place inher head first off where you're
not born yet.
Attorney Bob Mannor (33:20):
Just so you know.
Carrie Aalberts (33:20):
So that's first off, like she's reverted back
in her brain to where maybe shewas at home and she just sees
her sister and her mom now, ormaybe she lives with grandma,
what have it be.
But you weren't in thattimeline yet.
So one, don't take itpersonally in that sense, if you
(33:42):
can look at it that way.
And then two, how cool is itthat?
you're her safe space, now thatshe sees you as that loved one
from that other time period.
How cool that you're her safespace, that now you're her mom,
she loves her mom and she's nowseeing you as that loved one.
And so to look at it in thatway and to be like, wow, I'm
still her person, even though Imight not be called the same
name, I'm still that person shesees as her safety net, and I
(34:03):
think that's a beautiful thingand it's just with the fact of
seeing you know oh, I wasn'teven part of that timeline for
her yet is a really big aha forpeople.
I think too, in the sense, thatit's not that she forgot you
necessarily.
She's literally back in time.
You know what I'm saying so it'sa whole different kind of way
(34:23):
to look at that.
So I like to leave people withthat kind of just to think about
, but also know that you'revalid and that this is the
hardest thing ever.
And please give yourself gracewhen guilt comes on, when the
grief is too rough, when youfeel like you're hitting your
burnout point.
Please, you know, please,please care for yourself,
(34:44):
because if something happens toyou, you know what's going to
happen to the people that youcare for too, so we have to make
sure we're caring for yourself.
That is an act of love to thepeople you're caring for when
you care for yourself.
Attorney Bob Mannor (34:56):
Absolutely Very well said.
Well, thank you, carrie fromDemented Darling.
Thank you and this has beenAdvice from your Advocates.
If you enjoyed this podcast andyou want to know when we have
future ones, feel free tosubscribe to Advice from your
Advocates on any of the podcastplaces that you listen to a
podcast, or you can go to ourwebsite at manorlawgroupcom.
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